Completed

Family Health After Predictive Huntington Disease Testing

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What is being collected

Data Collection

Who is being recruted

Basal Ganglia Diseases
+12

+ Mental Disorders
+ Brain Diseases
See all eligibility criteria
How is the trial designed

Observational
Study Start: September 2001
See protocol details

Summary

Principal SponsorNational Institute of Nursing Research (NINR)
Last updated: January 14, 2026
Sourced from a government-validated database.Claim as a partner
Study start date: September 1, 2001Actual date on which the first participant was enrolled.

This is an observational study with three phases. In Phase 1, focus groups consisting of family members of persons with HD Gene mutation will be conducted and data collected to be analyzed through content analysis to identify salient themes and key issues. In Phase 2, a survey instrument will be developed and field-tested in order to describe the health care needs, management strategies, and needs for health and social services of relative/significant others of asymptomatic and symptomatic persons with the mutation in the gene for HD. In Phase 3, the survey will be distributed to family members of asymptomatic and symptomatic persons with mutation in the gene for HD and frequencies and comparisons of survey responses according to respondent characteristics will be reported.

Official TitleFamily Health After Predictive Huntington Disease Testing 
NCT000751401R01NR007970-01
Principal SponsorNational Institute of Nursing Research (NINR)
Last updated: January 14, 2026
Sourced from a government-validated database.Claim as a partner

Protocol

This section provides details of the study plan, including how the study is designed and what the study is measuring.
Design Details
422 patients to be enrolledTotal number of participants that the clinical trial aims to recruit.

How participants are selected
Participants are chosen using a random method, so everyone has a known and fair chance of being selected. This approach helps ensure the results reflect the broader population.
Another way to select participants is through a non-probability sample, where participants are selected without randomization, often based on availability or willingness to take part.

Eligibility

Researchers look for people who fit a certain description, called eligibility criteria: person's general health condition or prior treatments.
Conditions
Criteria
Any sexBiological sex of participants that are eligible to enroll.
Healthy volunteers not allowedIf individuals who are healthy and do not have the condition being studied can participate.
Conditions
Pathology
Basal Ganglia Diseases
Mental Disorders
Brain Diseases
Central Nervous System Diseases
Chorea
Cognition Disorders
Dementia
Huntington Disease
Movement Disorders
Nervous System Diseases
Neurodegenerative Diseases
Neurocognitive Disorders
Heredodegenerative Disorders, Nervous System
Dyskinesias
Genetic Diseases, Inborn
Criteria

* Family members of asymptomatic and symptomatic persons with mutation in the gene for Huntington Disease

Study Plan

Find out more about all the medication administered in this study, their detailed description and what they involve.
Study Objectives
Study Objectives
Primary Objectives

Secondary Objectives

Study Centers

These are the hospitals, clinics, or research facilities where the trial is being conducted. You can find the location closest to you and its status.
This study has 1 location
Suspended
The University of Iowa College of NursingIowa City, United StatesSee the location
CompletedOne Study Center